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Summer 2003 Transplant Chronicles is a Program of the National Kidney Foundation. Volume 11, Number 1 A Broken Heart Mended By Mary C. Foy Before stress that if you have a serious illness, transplantation are unsure of medical treatment or don’t understand your diagnosis, get a t an early age I couldn’t stand the second and possibly a third opinion. Asmell of powders, colognes, dust or food made with milk. I suffered for a At the time, I was financially stable, long time and an allergy test showed had a good job, a nice home, a loving the many things I was allergic to. After family and a husband. But after being treatments I went back to my daily told I needed a heart transplant, all hell activities, but the symptoms returned. I broke loose! My husband decided he saw a specialist far from my home and wanted a divorce, my insurance ran out learned I had about 15 different things and I had to move in with my elderly wrong with me that could possibly mother. To top it all, I had no income to support myself. My faith in the Lord cause my asthma attacks. By this time I Mary C. on-line at: www.kidney.org/recips/transaction/chronicles.cfm also had high blood pressure and helped me through these hard times. chronic bronchitis. I even lost my job I went from heart specialists to heart home and wait, though there were stip- due to my medical problems. hospitals and had dozens of heart ulations to my returning home. I had to wear an electronic paging device and For years I went from doctor to doctor, tests. I landed at a heart transplant could not be left alone. This meant that trying to stay healthy, until another sur- unit for evaluation since my heart was my family had to move in with me. prise arose: I found out the problem all only functioning at 20 percent. I was prescribed new heart meds. My physi- along was my heart! Being misdiag- My real life began in May 1998 when I nosed, I never knew this. This is why I cian told me that I would do well for ansplant Chronicles received a call that a heart was avail- a while. Tr able, and I needed to gather my med- In this volume of The ication and get to the hospital right wait away. The hospital was two and a half Transplant Chronicles hours away! I was nervous and afraid Eight years passed and there were no of what was going to happen, but I ➢ Find more information on health changes until I developed pneumonia. couldn’t seem to voice my opinion. insurance and social security on This forced me to be evaluated again. My faith in God carried me through all pages 4 and 5. Because my heart was only functioning the obstacles. ➢ Read about new transplant med- at 10 percent, the time of my heart ications on page 6. transplant surgery was near. After I was wheeled into surgery, my daughter waited nervously. When she ➢ Learn the importance of staying I was scared and didn’t know if I was going to make it through such a saw the physician walking towards her hydrated in hot weather and during after only two hours she nearly passed exercise on pages 13 and 14. major surgery. But I did so well, my ou can now read the latest issue of physicians decided to let me return Continued on page 3 Y

©Copyright 2003 Published by the for transplant recipients of all organs and their families. National Kidney Foundation ISSN# 1524-7635 editor’seditor’s deskdesk is our pharmacy column on what’s new in the medications for transplant. Beverly David Post updates you on the latest Kirkpatrick trends that are being used today. Transplant Chronicles is published by the National Editor-in-Chief Kidney Foundation, Inc. Pediatric transplant is not just a small Opinions expressed in this publication do not necessarily represent the position of the National elcome to another issue of part of transplant, although one may Kidney Foundation, Inc. WTransplant Chronicles. You are think so since more seems to be writ- Volunteer Editorial Board: all deep into the summer months at ten for adults. Our little recipients are Beverly Kirkpatrick, MSW, LSW this time, so I hope everyone is prac- important, too, which Dr. Bruce Editor-in-Chief ticing all the precautions of fun in the A.I. duPont Hospital for Children Kaiser and Dr. Adela Casas-Melley Wilmington, DE sun. One very important tip is to stay present in this issue. hydrated, which is covered in our Kay Atkins, MS, RD Banner Good Samaritan Transplant Services nutrition and exercise sections. Enjoy the rest of your summer, as Phoenix, AZ before you know it winter will be Adela T. Casas-Melley, MD This issue continues with its series of here! T A.I. duPont Hospital for Children financial tips for transplant recipients, C Wilmington, DE and also Dr. Robert Gaston’s series on Michael Cervantes, LCSW, MSW Beverly Kirkpatrick Loma Linda University trends in living donation. A topic that for the Editorial Board Kidney Center is always an eye catcher for recipients [email protected] Loma Linda, CA Robert Gaston, MD University of Alabama Hi Beverly, Division of Nephrology Birmingham, AL I just received my copy of the latest Transplant Suzanne Lane-Conrad, RN, MS, CPTC Chronicles (Winter 2003) and you asked for our feel- Iowa Donor Network ings about our health so though I would give you mine. Iowa City, IA David J. Post, PharmD, BCPS I am 69 years young and feeling very good. I had my Mayo Clinic Hospital kidney transplant in 1993. I am married and have three Phoenix, AZ married children and six grandchildren. I live for my grandchildren as Trent Tipple, MD Chair, transAction Executive Committee does my wife, Beverly. In 1995 I was instrumental in forming a support Columbus, OH group called TRIO in central New York. I volunteer at our transplant hos- Vanessa Underwood, BS, AFAA, ACE, ACSM pital assisting the candidates coming in for evaluations. I also visit trans- Fitness Trainer/Wellness Consultant plant patients in the hospital as often as possible. I have many interests: Plaistow, NH Jim Warren, MS first off, all our grandchildren. My activities include bowling, golfing, cre- Transplant News ating stained glass suncatchers and windows, gardening, woodworking Fresno, CA and family genealogy. I stay as busy as I can—when you rest, you rust, or Laurie Williams, RN, CPTC if you don’t use it, you lose it. University of Nebraska Medical Center Omaha, NE I always say: “You can complain because roses have thorns, OR you can Editorial Office: rejoice because thorns have roses.” (author of quote unknown) National Kidney Foundation, Inc. 30 E. 33rd Street, New York, NY 10016 Paul G. Meigs (800) 622-9010, (212) 889-2210 http://www.kidney.org Dear transAction Council: Editorial Director: I read your Transplant Chronicles newsletter. It has a lot of good stories Catherine Paykin, MSSW and information. When I found out I had kidney disease, I didn’t know Managing Editor: what to do, so I was glad you were there for me. Thank you.

Sara Kosowsky letters to the editor I have a problem getting life insurance coverage, health insurance and Publications Manager: Will Comerford paying for my prescribed medications. I do have Medicare, but that is not Production Manager: so much. So if you have anything that can help me I would really be Sunil Vyas thankful. Thank you again, Design Director: Russell A. Walker Oumaya Abi Saab Philadelphia, PA Editorial Manager: Jennifer A. Miller, MS In this issue you will find the first article in a two-part series addressing health and life insurance issues written by an attorney in the insurance Executive Editor: Gigi Politoski industry. – Editor

2 Transplant Chronicles, Vol. 11, No. 1 A Broken Heart Mended Lifechoices Continued from page 1 My daily living is done one day at a out with the worst fears that I did not time. I find myself making lots of make it. But he actually came to choices: Do I buy my medication, pay inform and reassure my family that my utility bills or purchase groceries? everything had gone well and he had And of course medication comes first connected my new heart in only one after having a transplant! Believe me, hour and 45 minutes. there are also days when I don’t feel After waking from surgery I knew I well because of the many health risks I was all right because I felt warm and have, such as high blood pressure, my heart was beating strong. Three blood sugar and my weight. As for days later I was transferred out of ICU social activity, I don’t date because of to a regular room where my family and the explaining I would have to do. friends were waiting. But I must say to Most men are not anticipating a woman those who are waiting for some sort of with health problems. transplant: Hold on and be patient. Although there have been times when I Help is on the way. Kim Lee, 1962-1998, cried a lot and asked why, I continued Back at was the to believe that tomorrow would be home donor of the heart that brighter. After experiencing all the loss- gave Mary her second es I have had, one thing is for sure: If I Now let’s talk about the medications. had to do it all over again, I would! A few days after the surgery the One of the things I enjoy most is the social worker came to my room to Eventually I had to turn to welfare. communication I have with the outside discuss the medications that I would My social worker from the transplant world. I go to schools and colleges to be taking—there would be about 100. unit was very helpful with all the talk to teenagers and adults about being I can recall saying to myself, “Oh my paperwork. Dealing with Medicaid an organ donor. I go to hospitals to God!” When the nurses finally came and welfare became an experience. I encourage others at low points in their in with all the medication I could not was put on a program called “spend- lives. Some day I hope to write a book believe I was supposed to take that down.” Under this program, I had to that would encourage others to take many pills at one time. But I was spend any extra money I had on med- good care of themselves and get yearly going to do whatever was necessary ical expenses until I reached the check-ups. These recommendations for me to get well, so if that meant poverty level and qualified for will help in prevention. taking 100 pills a day, that’s what I Medicaid. Believe me, after going would do. through this, you really don’t have About the Author Some changes in my body occurred much money to live on. But I thank Mary Foy is a heart recipient from from taking all these medications, God for having such loving and under- Ohio. She volunteers her time including fatigue, swelling, skin pig- standing children and family members. helping others and is a member of the ment changes, appetite loss and transAction Council executive T tremors. Expense was another blow to committee. C my mind and pocket. The cost of the medication was (and still is) extreme- 2004 U.S. Transplant Games: SAVE THE DATE! ly high, and there were not any organ- The National Kidney Foundation’s 2004 U.S. izations to help with this cost, so Transplant Games will be held in Minneapolis, there I was trying to pay. Minnesota, from July 27 to August 1 next year. The Then more worries came...particularly Games, held every two years, are the largest sports with insurance. My doctor told me event in the world for people with life-saving organ I wouldn’t be able to return to work, transplants. The event will commemorate the 50th I had used up all my sick time and anniversary of transplantation. For more information about next year’s 401k plan and was unable to purchase Games, visit the official Web site: www.transplantgames.com insurance. That was when, once again, my children, family, church Have you had your transplant longer than anyone else at your transplant and other support teams stepped in center’s program? If so, we want you at the US Transplant Games! If you and carried more of my financial fit this bill we want to hear from you or your coordinator at obligations. [email protected] or 800-622-9010.

Transplant Chronicles, Vol. 11, No. 1 3 Financial Security After Transplantation: The Basics Part 1 of a 2 part series

By Alexander H. Whiteaker ransplant recipients need to plan for the future and take care of their present financial needs as much Tas anyone else. Recipients, however, face obstacles that the larger healthy population does not. We are sick more often, take expensive medications and may be viewed as disabled by our peers and employers. First, take care of your physical well-being. Take your medicines as prescribed. Eat well and exercise every day. You must then provide for your living space, finance your health care, diet, utilities, transporta- tion and leisure activities. Third, if you have a family, you must provide for your loved ones. Education Aprospective employer is forbidden Individual policies may be obtained in by law from asking about your med- many states, but are very expensive An education is imperative, whether it ical history. But if you get the job, he or and provide minimal benefits. Also, if is career training or a general educa- she will soon find out what you did not employment is terminated at a large tion in science and arts. Education is a voluntarily disclose. It is not difficult for company, they must offer you the strong foundation that facilitates an employer to terminate someone’s option of continuing your company employment. Employment provides employment on grounds other than dis- coverage under “COBRA” (the various levels of financial and ability or health condition. Consolidated Omnibus Budget sociopsychological security. Reconciliation Act of 1985) for either Whether you decide to volunteer infor- Younger people living at home should 18, 29 or 36 months, depending on mation about your transplant is up to concentrate on studies. Older people, various factors. Under COBRA you you. Your intuition and experience may especially those who have been chroni- may pay up to 102 percent of the help you decide what to do. Bear in cally ill prior to transplant, or are unable premium formerly paid primarily by mind that the size and financial condi- to return to their previous occupations, the employer. tion of a prospective employer may have many avenues for continuing edu- influence whether they will find you a Many employers offer a choice of cation. States, cities and nonprofit burden later on. For example, a small policies or plans. If they do, then they organizations make vocational training 10-person firm may not be able to afford probably allow an opportunity to programs available. There are evening lost time to sickness or doctor visits— switch coverage once a year. This is courses and degree programs that allow you are 10 percent of the work force. On called an “open enrollment” period. people to work full time. I worked full the other hand, the 10-person firm The usual choices are described in the time while attending law school at should not experience an increase in its box on page 5. Understand the limita- night. After passing the Bar, I quit my insurance premiums because its premi- tions of each policy. Request and read job and joined a law firm. By attending ums are based on the experience of all the employee booklet before enrolling. school at night, I could afford to pay small employers in the community. With If possible, obtain the policy and read part of my education out-of-pocket a larger employer, the reverse is true. that too. Booklets do not contain all while not experiencing a decrease in my policy provisions. Look for limitations standard of living. Health Insurance and exclusions on coverage, proce- Employment First, if eligible, you should continue dures and drugs. Check to make sure Medicare Parts A and B. The Social your health care providers are covered Some recipients return to the same job Security Administration allows some in a PPO, POS or HMO. Ascertain they held before their transplant, but recipients to continue coverage after the dollar amounts of any co-pays others have not held jobs or have lost their disability benefits cease. Visit a and deductibles. jobs because of disability. Finding Social Security office as soon as you employment is a core concern. You are able. Life Insurance might experience real or imagined dis- Life insurance insures an individual crimination by prospective employers. Group health insurance through against the fortuitous (unexpected) loss Some employers will have reservations employment usually provides the most of life. Death must be unforeseeable. about employing you, even if you are comprehensive coverage. This is anoth- Actuaries have determined the approxi- the ideal candidate. If an employer er reason why you must seek out mate numbers of persons who will die knows you have had a transplant, he or employment, if possible, or have your at any given age. This is referred to as she knows health care expenses will spouse work at a job that offers health the risk of dying. The risk applies to all increase and there will be days lost to care coverage. This is usually the least costly method of getting covered. sickness and doctor visits. Continued on page 5

4 Transplant Chronicles, Vol. 11, No. 1 Financial Security… $50,000 to $100,000 without evidence of insurability. Also, upon termination Continued from page 4 of employment, the insurer must offer persons in one-year age bracket, by sex. the right to convert to an individual Insurance companies vary the risks they policy within 30 days of the end of underwrite. For example there are pre- employment. Although the conversion ferred rate policies for healthy non- policy is expensive, it is better than smokers. This is because nonsmokers nothing if you need some income pro- die in smaller numbers at any given age tection after death. than smokers. Smokers, on the other The author, shown here on a While getting insurance is difficult, hand, have higher premiums. visit to a game preserve in Africa. it is not impossible. A number of com- A significant portion of the population panies offer special high-risk policies. is “uninsurable.” Transplant recipients chasing protection. To add high risks These are very expensive, but consider generally fall within this category. The increases the premium, which is unac- asking a broker about such coverage if ceptable to healthy persons who will simple fact is that the risk of death is you need added protection. T refuse to purchase higher cost prod- C very high, there is underlying disease, In the next issue of Transplant Chronicles we complications due to immunosuppres- ucts when other companies may offer lower premiums for similar products. shall review some ground rules for planning for sion and increased incidence of cancers, the future in Part 2 of our Series. rejection and everything else imagina- Given the difficulty of obtaining life About the Author ble. Many people argue that refusal to insurance, it is strongly urged that you Alexander Whiteaker, a past director of insure a recipient is unfair on the part of maintain any policy now in force. This TRIO, Manhattan Chapter, is a volun- insurance companies. But remember includes group insurance through your teer with many transplant organizations that it is the insurance company that is employer. Group life insurance is often including the transAction Council exec- facilitating the sharing of risk. The cost not subject to medical underwriting— utive committee. falls on the entire class of persons pur- you can obtain at least a base amount of types of health plans Indemnity: The traditional insurance policy providing coverage anywhere, without restrictions to certain doctors and hospitals. You are required to pay for services and seek reimbursement up to the plan limit for covered services (as described in the policy—not everything is covered), subject to an annual deductible. Most policies provide reimbursement up to 80 percent of the reasonable and customary rates charged in your community, which means a percentage of the rates published by the Health Insurance Association of America (HIAA). Most companies or insurers will pay providers directly, and most providers will accept assignment (they won’t charge more than the rate published by HIAA). Often there are both individual deductibles and family deductibles and limits on your out-of-pocket expenses.

High Deductible Plan: It is becoming more common for employers to offer “high deductible” plans. Under these plans the deductible may be $10,000 or more. The employer either offers a Medical Savings Plan (MSA) to fund much of the deductible or a new type of funding, Healthcare Reimbursement Arrangement (HRA). The MSA can be portable and cashed out when employment ends, whereas the HRA may not be ported or cashed out. PPO: The Preferred Provider Organization (PPO) is a variation on the indemnity. It incorporates a Preferred Provider Network, under which doctors, hospitals and other service providers are contracted to provide services at discounted rates. The benefit to you is a small co-pay per visit—and the benefit to the providers is a larger stream of users or patients (increased volume). You can use an out-of-network doctor, but it will cost you more: a deductible will apply and a higher out of pocket cost for you due to lower reimbursement to the provider. But compared to the indemnity plan, the PPO is probably equal in terms of cost to you for using out-of-network providers. HMO: The Health Maintenance Organization (HMO) is a closed network of providers that you must use, paying a small co-pay per visit. This is the cheapest plan, and has been subject to severe criticism, much of it misplaced in part because, unfortunately, HMOs have advertised services as “first rate” and induced the public to believe that the HMO provides first- class service. While actual medical care is good, do not expect the same level of service as with the indemnity plan. The HMO is designed to reduce health care costs. POS: If the PPO is an indemnity plan with an in-network feature, the Point of Service (POS) is the reverse: an HMO with an out-of-network feature. However, the incentives to stay in network are often greater than in the PPO model.

Transplant Chronicles, Vol. 11, No. 1 5 askask thethe pharmacistpharmacist New Therapeutic Treatments By David J. Post, PharmD, BCPS he medications prescribed for you some of the toxic side effects in the cur- There is also a smattering of other Tafter transplantation have come a rent drug routine. research studies. One of particular inter- long way over the past 20 years. Since est is looking at how to induce “toler- In the first study, corticosteroids are the advent of cyclosporine in the early ance.” Researchers are trying to find being removed from the “drug cocktail” 1980s, a growing collection of new ways to get the transplant recipient’s given to transplant patients. They are not pharmaceutical agents has led to drama- body to accept the transplanted organ used at all or are given for only a short tic improvement in organ survival. either with very low anti-rejection treat- period (less than seven days) early in the ment or ultimately with no long-term The use of multiple drugs has changed post-transplantation treatment period. anti-rejection treatment. the landscape of transplantation from Rather than being given corticosteroids, what was once an “iffy” procedure. For These studies are still in their these patients receive potent drugs that example, for kidneys, the one-year graft early stages. Each will have to be suppress the immune system at the time survival rate is now more than 90 per- followed for quite some time to of transplantation and for a short period cent, and the three-year graft survival see how its results compare to our after the operation. rate is more than 80 percent, according current standards. to the Organ Procurement and The risk is that there Transplantation Network will be either too much “The use of multiple drugs has changed the (www.optn.org/latestData/rptStrat.asp). or too little suppression landscape of transplantation from what was of the body’s immune In general terms, the current standard response. Too much once an “iffy” procedure.” approach to immunosuppression (anti- may make one vulnera- rejection) has been to use three types of ble to infection, whereas too little may Along with the question of what new drugs. These are a calcineurin inhibitor increase the possibility of rejection. treatments might be available, the treat- (tacrolimus or cyclosporine), a purine ment of PTLD (post-transplantation synthesis inhibitor (mycophenolate Over the long term, though, there lymphoproliferative disorder), associat- mofetil or azathioprine), and a corticos- should be major benefits to the new ed with Epstein-Barr virus, is not far teroid (prednisone). drug therapies. Eliminating corticos- behind. This disorder has been linked to teroids also gets rid of possible toxic But every advance has come at some treatment with high doses of anti-rejec- effects. These effects include osteo- cost. We have become the victims of our tion drugs. It involves the growth of porosis (loss of bone density), hyper- own success. Although some of these lymphocytes of B-cell origin that have tension (high blood pressure), cosmetic new drugs are extremely effective, they been infected with the virus. changes, diabetes mellitus, hyperlipi- may eventually damage the transplanted demia (high lipid levels), stomach Currently, there is no overall agreement organ. They may also have toxic effects ulcers and skin breakdown. on how to prevent or treat PTLD. on other parts of the body. These include Earlier strategies involved reducing the potentially harmful effects on bones or In the second study, calcineurin patient’s intake of anti-rejection drugs certain types of blood cells (red blood inhibitors are removed from the drug and hoping for the best. Now new mon- cells, white blood cells, platelets). cocktail. This involves leaving out either oclonal antibodies offer other options. tacrolimus or cyclosporine. Medical professionals who work in the Rituximab is a monoclonal antibody transplant community are all too famil- As a result, potent drugs must be given that binds to a portion of the B cell, in iar with such problems. Most impor- during the early part of the post-trans- effect killing it. Theoretically, by tantly, we do not want you to stop taking plantation process. These replacement depleting B cells, rituximab helps these drugs due to side effects, thus drugs suppress the effects of the patient’s decrease virus numbers. Some benefits compromising the safety of the trans- immune system, as in the previous trial. have been shown early on in trials. planted organ. In place of either tacrolimus or With further research and treatment, To address these problems, researchers cyclosporine, rapamycin is used. This you will continue to gain access to are working to develop new treatment anti-rejection drug, available since 1999, more advanced drugs. Along the way, techniques and new drugs for use after has its own side effects: increases in the you will also benefit from a growing transplantation. Currently, two multi- levels of blood lipids and reductions in knowledge base about these drugs, their T center clinical trials are trying to reduce blood platelets and hemoglobin. interactions and their side effects. C

6 Transplant Chronicles, Vol. 11, No. 1 medicalmedical beatbeat Kidney Transplantation in Children By Bruce Kaiser, MD

he development of chronic kidney nephritis only 15 percent and congeni- 75 percent at five years. The improve- Tfailure is rare in children. It is tal/hereditary diseases only 10 per- ment in the last 10 years is five per- estimated that for children under age cent. cent for live related and almost 20 19, 15 out of one million will develop percent for kidneys from nonliving Once chronic kidney failure develops, kidney failure every year and need to donors. The reason for this improve- in order to stay alive a patient must start dialysis or receive a transplant. ment is the addition of new and better either start dialysis or receive a kid- This is much less common than in medications that prevent rejection. ney transplant. In adults over 90 per- adults—about 120 people per million Rejection is the body’s attempt to cent will start dialysis (usually between the ages of 20 and 44 years destroy the transplanted kidney hemodialysis) before a kidney trans- and 570 people per million between because it is considered a foreign plant. However, for children 75 per- the ages of 45 and 65 years will go invader by the white blood cells in cent will start dialysis, but 25 percent into kidney failure each year. our immune system. will receive a kidney transplant first, called a pre- The new medications include special- emptive transplant. The ized antibodies that target and destroy general feeling is that active white cells that start the rejec- children will have a better tion process. They are now used when life whether they receive the kidney is first transplanted, dimin- a kidney transplant before ishing the number of early rejections or after dialysis. that are sometimes the worst. In addition, mycophenolate mofetil, which There are two types of seems stronger than an earlier choice kidney transplants. A of immunosuppressant, will decrease transplant from a living the number of white cells that cause donor, which now rejection. The use of either accounts for 50 percent of cyclosprine or tacrolimus is still the the transplants in children backbone of stopping rejection by (up from 40 percent 10 preventing the white cells that cause years ago), is usually rejection from sending signals to from a relative (about 90 activate more white cells to expand percent of the time it is a the rejection process. However, parent). The because both of these medications The causes of chronic kidney other 50 per- can cause scars in the kidney, another failure are much different in chil- cent of children new medicine called rapamycin dren than in adults. get a non-living The causes of chronic kidney (which works in a similar way) is donor organ from failure are also much different in chil- being tried in children. These newer a person who dies with healthy organs dren than in adults. Among children, medications have allowed the use of and whose family agrees to donate. about one third of chronic kidney fail- less and less steroids, resulting in These kidneys are given to people on ure is due to congenital/ hereditary fewer side effects. kidney diseases, one third is due to a waiting list based on who matches nephritis (an inflammation of the fil- the kidney best and who has been Overall, the success of kidney trans- ters in the kidneys) and less than one waiting the longest. plants continues to improve, but that success still depends on medications third is due to other diseases that can How long a transplanted kidney will that stop our immune system from damage a kidney, including diabetes last is called survival, and this has destroying the kidney. T and hypertension. These rarely cause improved over the years. At this time C kidney failure in children. However, nonliving organ survival is 84 percent About the Author for adults, diabetes causes almost 40 at one year and 66 percent at five Bruce Kaiser, MD, is a pediatric percent of all cases of chronic kidney years. Live related kidneys have a 92 nephrologist at A.I. duPont Hospital failure, hypertension 25 percent, percent survival rate at one year and for Children in Wilmington, Delaware.

Transplant Chronicles, Vol. 11, No. 1 7 more Is It Safe to Donate a Kidney? medical beat By Robert S. Gaston, MD Robert S. Gaston, MD

his article is the second in our felt the risk of surgery was lower than low-up, a deficiency the transplant Tseries addressing new trends in liv- the risk of the test itself! Current stan- community is working hard to correct. ing donor kidney transplantation. As dards of testing, with dramatically A recent, alarming paper from the we implied in the last issue, none of us lower complication rates, indicate just United Network for Organ Sharing would be writing or reading this mate- how far we’ve come. documented 56 previous living donors rial without the courage of pioneering who eventually needed a transplant surgeons and live kidney donors in the The best-documented risks associated themselves. (Ellison et al, 2002) earliest days of clinical transplantation. with donating a kidney are those of the However, even the authors recognize However, even those pioneers recog- operation itself. Some kidney donors the inadequacy of this number in help- nized the potential consequences of have died in the process, with the risk ing to determine the actual risk of ulti- performing a major operation on an said to be 0.03 percent (3 in 10,000). mately losing kidney function after otherwise healthy person for the bene- This is similar to the risk of death with donation. Are there other cases out fit of someone else. Their decision to any procedure performed under gener- there? Probably. Unless there are many proceed was based on three assump- al anesthesia. (Bay and Hebert, 1987) more, however, risk of kidney failure tions: the transplant should occur only Over 90 percent of donors experience after donating seems little different if there is a good chance of a success- no complications at all; a small per- from the risk of ESRD in the general ful outcome in the recipient, low risk centage suffers typical surgical compli- population (0.03 percent). Comprehen- to the donor and voluntary consent of cations such as bleeding, wound infec- sive data from Sweden and Switzerland all involved. (Merrill et al, 1956) tions, fever, constipation, atelectasis indicate no increased risk to donors, at Now, after almost 50 years, these three (failure to fully expand small air sacs least over a 5 to 10 year period. (Fehrman-Ekholm, 2001) “We in the transplant community remain committed to doing The spotty information currently avail- everything possible to ensure the safety of those who entrust able from the United States indicates us to deliver their gifts of life.” slight risk of proteinuria and high blood pressure in donors after 10 to 20 criteria remain the cornerstone of our in your lungs) or blood clots. These are years, but at rates similar to what approach to live donors. Outcomes in typically not life threatening, but may might be expected in non-donors over recipients are better than ever, and the prolong recovery. Many donors experi- that period of time. New efforts are need for informed consent is ingrained ence enough muscle soreness to pre- underway to define long-term donor in our psyches. But, how much more clude vigorous activities for several risks more precisely. do we really know about donor risk? weeks, but eventually go on to full recovery. A recent survey of donor Thus, while the data we have remain Donor risks fall into three categories: operations performed at US transplant incomplete, they paint a picture consis- those associated with diagnostic tests, centers since 1999 shows complication tent with the original Boston mandate: the surgical procedure itself, and living rates of fewer than one percent, and not a total absence, but low risk for the remainder of one’s life with a sin- indicates that laparoscopic nephrec- kidney donors. As more and more peo- gle kidney. Evaluation of potential tomy is no riskier than the open proce- ple contemplate giving a kidney to a donors involves what most would label dure. (Matas et al, 2002) loved one, each will have to weigh as minor risks, such as bruising from these adverse consequences in light Finally, what does it mean to go blood sampling, bleeding from needle of his or her own individual situation. through life with one kidney? Potential sticks or a reaction to administration We in the transplant community long-term complications remain the of intravascular contrast dyes. Even remain committed to doing everything greatest concern of professionals though these occur rarely, they can be possible to ensure the safety of those involved with live donor transplanta- a major problem in an occasional who entrust us to deliver their gifts tion. Unlike the minute, precise data donor. The Boston surgeons of the of life. T 1950s avoided imaging the kidneys collected regarding outcomes in recipi- C with x-rays and contrast because they ents, there is no standard for donor fol-

8 Transplant Chronicles, Vol. 11, No. 1 TTransplantransplant NewsNews DigestDigest from the editors of Transplant News By Jim Warren, editor and publisher Transplant News, edited and published by Jim Warren, is a twice-monthly newsletter for the transplant community focusing on developments in organ, tissue, eye and bone marrow procurement and transplantation. Transplant News Digest is written exclusively for quarterly publication in Transplant Chronicles. For more information about Transplant News visit: http://www.trannews.com Jim Warren

NEW For monthly updates from the Transplant News editors, read Chronicles Xtra at www.recipientvoices.org

Frustrated by failure to attract Permission would be granted by the Punch acknowledges that the plan new donors, transplant commu- potential donor when he or she signs has weaknesses that still need to nity seems ready to try once up to be a donor. The compensation be eliminated. taboo methods would be received by the beneficiary after the donor’s death. “The plan calls for a national donor rustrated by the inability of edu- registry, and that could be a huge Fcation programs to attract new Jeffrey Punch, MD, chief of the problem given the amount of time it organ donors, the transplant com- Division of Transplantation at the could take to be developed,” he munity has turned its focus to sever- University of Michigan in Ann noted. “There are also privacy issues, al controversial, long-tabooed meth- Arbor, was initially skeptical of the questions about what to do with non- ods to increase the supply of proposal, but now supports holding residents, how to include children, organs—providing financial incen- a trial in Michigan if legislation is and whether it could be a disincentive tives for deceased donor beneficiar- passed that makes it legal and funds for a family to be honest about the ies, compensating live donors, dona- become available. donor’s medical history.” tion by direct authorization and pre- Punch presented the plan at a May “The only way to know if it would sumed consent. meeting sponsored by the University work is to obtain empirical evi- Perhaps the most intriguing of these of Chicago, entitled “Organ dence,” Punch concluded. “Most is the emergence of a financial-incen- Transplantation: Economic, Ethical studies show that financial compen- tives proposal for deceased-donor and Policy Issues.” sation is well received if you ask the beneficiaries developed by Richard question right. The only way to know Speaking to about 150 participants, M. De Vos, a heart transplant recipi- if it works is by testing it for three to Punch explained that the plan would ent who owns the $4.1 billion five years.” ultimately require the existence of a Amway Corporation and the Orlando national donor registry, but the initial Donation by Donor Authorization Magic basketball team, and Luis trial would only require an estab- Tomatis, MD, a heart specialist who lished state registry like the one that A key component of the proposal is works as the 77-year-old De Vos’s currently exists in Michigan. that the donor’s right to donate chief aide on health issues. Tomatis should take precedence over full said the idea is based on “Project “Registrants give permission to family consent. Organ Donor” developed by Gene donate and designate a beneficiary,” Epstein and Al Bozeman several Punch explained. “After brain death “When the decedent’s wishes are fol- years ago. occurs and the family is notified, the lowed there is a 100 percent donation registry is searched. If the person has rate,” Robert Metzger, MD, medical The financial incentive, in the form signed up, and organ donation occurs, director of the TransLife Transplant of a $10,000 tax credit or premium- the payment is made to the designee, Program at Florida Hospital Medical free insurance policy to be received which could be children, a spouse, a Center in Orlando, told participants at by the designated beneficiary upon college or even a charity. Financial the University of Chicago meeting. the completed transplantation of the analyses indicate that each organ “When family consent is requested donor’s organs, is designed to get donor saves at least $200,000 in the number drops to 51 percent for millions of citizens to sign a donor Medicare costs for each kidney trans- organs, from 97 percent to 27 percent card or indicate their willingness to planted. We feel that $10,000 pay- for tissues, and from 96 percent to 26 donate on a tax return or driver’s ment is appropriate.” percent for eyes. license application. Continued on next page

Transplant Chronicles, Vol. 11, No. 1 9 “A decedent’s right to donate takes to the transplant community is that the issue. “If 60 percent of the public precedence over the family consent you are part of the problem, not the accepts it, I would give it the green according to the Uniform Anatomical public. You’ve got to take advantage light to go forward.” Gift Act (UAGA),” Metzger said. “A of the new technology. David Courtney, executive director framework needs to be developed to of the Texas-based Presumed honor the donor’s wishes and respect “The first thing we did [after the Consent Foundation, said a recent the needs of the recipient while con- code was rewritten] was to check and survey showed 57 percent of Texans tinuing to care for the donor family. see if the deceased had made a deci- supported an opt-out system. He In the organ procurement trenches sion, then we went to the family and also noted that a bill calling for now, the coordinator is there for the said we are here to honor that deci- Texas to adopt a presumed consent donor families.” sion,” Leslie said. “After 18 months policy was introduced in April, and we’ve received very positive feed- that supporters are working to get Helen Leslie, executive director of back and overwhelmingly families similar legislation introduced this LifeNet in Virginia, explained the say, ‘It is so much easier knowing year in California, New York and need to take the national donor that the deceased wanted to do it. Rhode Island. authorization to members of the Thanks for helping us carry it out.’” Department of Health and Human Howard Nathan, president and CEO Services (HHS) Advisory Committee Leslie supports including donor of the Gift of Life OPO in on Organ Transplantation (ACOT) in rights as part of Patient Self Philadelphia, said there was a lot to Washington, DC. “The intent of the Determination, exploring the estab- admire about Berry’s call for a UAGA has always been [to allow lishment of uniform state donor reg- change, but cautioned that the people to agree to donate] without istries and conducting OPO-based media and lawyers have a lot to say any further consent required by the training for donor family contacts about whether such a change can be next of kin,” she said. that emphasizes and honors the deci- implemented. sion of the donor as a first priority. She pointed out that the law in Nathan noted that Pennsylvania was Virginia was reworded in July 2000 The ACOT voted unanimously to moving toward adopting a presumed to emphasize that the organ cannot be endorse the recommendations and consent trial in 1993 until a refused if the donor had signed a card submit them to HHS Secretary “firestorm of media” forced it to be or joined the state registry. Tommy Thompson. amended to a routine referral and for- mation of a registry instead. The Code of Virginia now reads in Presumed consent part: “An anatomical gift…regardless Despite misgivings by many trans- “I think the intent is good,” Nathan of the document making such gift or plant professionals that an already said. “Realistically, however, it has to donation, that is not revoked by the distrustful public would rebel against be done state by state by testing a donor before death is irrevocable and changing the current US system from pilot program.” does not require the consent or con- opt-in to opt-out, supporters of pre- currence of any person after the The Health Resources and Services sumed consent continue to press donor’s death…” and “The donor Administration (HRSA) Division of the issue. designation…shall be sufficient legal Transplantation (DOT) reportedly is concluding a new Gallup survey authority for the removal, following “The time has come to join Secretary which will include data on the pub- death, of the subject’s organs or tis- Thompson in hating the status quo lic’s attitude about presumed consent. sues without additional authority when it comes to finding ways to from the donor, or his family or increase donation,” Phil Berry, Jr., Berry, who was a driving force estate. No family member, guardian MD, told fellow ACOT members. behind the American Medical [or] agent…shall refuse to honor “The words ‘presumed’ and ‘consent’ Association’s (AMA) decision last the donor designation or, in any evoke much passion when joined year to support a trial of financial way, seek to avoid honoring the together at the hip, but they won’t incentives for deceased donors, is donor designation.” make the situation worse and just realistic about the ultimate success of might help.” changing the present system. Leslie said the key to making donor authorization work is a well-designed Berry, a liver transplant recipient and “There are more people dying wait- state donor registry. However, she former president of the Texas ing for organs than the year before,” added, “Registries don’t mean any- Medical Society, is calling for HHS Berry told AMNews. “It’s imperative thing if we aren’t going to adhere to to fund a national poll to find out that we look at every possible solu- the designation. The message I take exactly what the US public thinks of tion—including presumed consent.”

10 Transplant Chronicles, Vol. 11, No. 1 Living donors would clear the way for a financial Kidney donor exchange pro- incentives demonstration project and grams do not violate National Three bills currently under considera- allow kidney donor exchange pro- Organ Transplant Act, legal tion in the US Congress contain programs to continue without threat of analyst finds visions for reimbursing travel and legal action. other expenses incurred by living In a legal opinion that carries tremen- donors and their families. (Transplant Organ recipients need support to dous implications for those in need of News, March 17, 2003). They include take meds a kidney, an analyst has ruled that it S 573—The Organ Donation and is legal and proper to give waiting-list The immunosuppressant regimens Recovery Act introduced by Senator priority to a recipient whose loved required after organ transplantation Bill Frist (R-TN); S 376—The one or relative has donated a kidney are more challenging than most DONATE Act introduced by Senator anonymously to someone else. Richard Durbin (D-IL) and HR 399, patients realize, according to a study introduced by Representative by researchers at the University of Such an arrangement is not in viola- Michael Bilirakis (R-FL). Missouri-Columbia (MU). tion of the 1984 National Organ Transplant Act’s (NOTA) Section “One indicator of whether patients As the powerful Senate Majority 301, which prohibits buying and sell- will stay on their medications is if Leader and a former transplant sur- ing of human organs, according to a they have social support from family geon, Frist’s bill will undoubtedly set legal analysis. the standard if the House and Senate and friends,” said Cindy Russell, vote the bills out and they go to con- assistant professor of nursing, who “Transplant professionals involved in ference. The bill also holds the key to studied 16 kidney transplant recipi- these and other innovative living kid- holding public trials on financial ents. Russell’s research focused on ney donation arrangements have pro- incentives for deceased donors how patients took their medica- ceeded in the reasonable belief that because it contains funding for tions—specifically, the time of day these arrangements do not violate unspecified “demonstration projects” and their organization systems and NOTA Section 301,” wrote Malcolm and also calls for rewording the sec- reminders for taking their pills. Ritsch, Jr., General Counsel for the United Network for Organ Sharing tion in the National Organ Transplant After organ transplantation, a patient (UNOS), who conducted the analysis. Act (NOTA) on prohibiting any pay- may have to take nearly 20 pills While NOTA expressly prohibits the ment for organs and tissues to allow daily. While dosages often decrease exchange of money or property as a for such trials. (Michigan and central after a few months, these medications valuable consideration for a human Florida are already being discussed as generally must be taken for life. organ, Ritsch said live donor potential sites if the way is cleared to Some patients stop taking them due exchange programs are not a viola- hold a financial incentives trial.) to unpleasant side effects, such as tion of Section 301. “NOTA Section tremors, weight gain and mood Predictably, professionals uncomfort- 301 is legally and historically inappli- swings. Others may attempt to self- able with financial incentives pas- cable to today’s living donation medicate by taking fewer pills once sionately argue that the impact of arrangements,” he wrote. donor authorization and presumed they start feeling better. Noncompli- consent on increasing donation must ance with the regimen may lead to The Organ Procurement and be tried before even thinking about organ rejection, loss of the graft or Transplantation Network paying donors. Supporters point out even death. (OPTN)/United Network for Organ Sharing (UNOS) Kidney and that altruistic donation has not grown “It is more challenging than most Transplantation Committee requested at all in the past several years, pre- people realize to take these pills each the legal opinion early this year sumed consent is a recipe for disaster day,” Russell said. “Because of the because many transplant center’s and there is nothing to lose by con- side effects and sheer numbers of have expressed interest in developing ducting a well-designed, properly- medications, some patients wonder if exchange programs similar to those promoted financial incentives trial to it’s really worth it.” find out once and for all if it will sig- initiated in New England (UNOS nificantly increase donation. More studies are needed to determine Region 1) in March 2001. why some patients remain motivated (Transplant News, April 30, 2001). ACOT adopted a resolution endors- to take their medications and others Transplant News received a copy of ing Senator Frist’s provision to do not, said Russell. This information Ritsch’s analysis, dated March 7, change NOTA to exempt certain will help transplant teams assist kinds of benefits from being consid- patients in complying with immuno- ered “valuable consideration.” This suppressant regimens. Continued on next page

Transplant Chronicles, Vol. 11, No. 1 11 2003. Here is a portion of his analy- of ‘expenses of travel, housing and provision outlaws is the purchase and sis and conclusion. lost wages incurred by the donor of a sale of organs for profit. That was human organ in connection with the clearly Congress’ intent from the leg- “In recent years, donations of kid- donation of the organ’ is expressly islative history…certainly, Congress neys by living donors have begun permitted by Section 301 of NOTA. did not intend to endorse payment to to involve multiple donors and/or Such expenses are incurred by living the living donor for expenses and lost recipients. Transplant physicians donors and not by nonliving donors. wages…yet render the living dona- have been approached by individu- What NOTA’s one-sentence criminal tion arrangement itself criminal.” T als who wish to donate to a spouse C or other family member, but are unable to do so because of blood Number of Transplants by Donor Type in 2003 type incompatibility or other immunological barriers. Thus, (“To date”-from January 1, 1988—December 31, 2002) living donation arrangements TOTAL DONORS have been initiated that permit either an intended recipient ex- All Donor Types 2002—24,833 2001—23,998 To Date—280,705 change or a simultaneous living Deceased Donor 2002—18,228 2001—17,491 To Date—224,816 donor exchange. Living Donor 2002— 6,605 2001— 6,507 To Date— 55,889 KIDNEYS “Intended recipient exchanges involve three individuals: a living All Donor Types 2002—14,722 2001—14,107 To Date—167,229 donor, the recipient of the living Deceased Donor 2002— 8,490 2001— 8,140 To Date—113,612 donor’s kidney, and the donor’s Living Donor 2002— 6,232 2001— 5,967 To Date— 53,617 intended recipient who receives an LIVER allocation priority on the kidney All Donor Types 2002—5,327 2001—5,157 To Date—56,127 waiting list. The intended recipient Deceased Donor 2002—4,969 2001—4,640 To Date—54,170 exchange program yields additional Living Donor 2002— 358 2001— 517 To Date— 1,957 donor sources for patients awaiting nonliving donor organs. PANCREAS All Donor Types 2002—546 2001—464 To Date—3,095 “Paired exchanges involve two living Deceased Donor 2002—545 2001—463 To Date—3,073 donors and two recipients—the Living Donor 2002— 1 2001— 1 To Date— 22 intended recipient of each donor is incompatible with the intended donor KIDNEY/PANCREAS but compatible with the other donor All Donor Types 2002—903 2001—884 To Date—10,485 in the exchange. Every paired Deceased Donor 2002—903 2001—882 To Date—10,444 exchange transplant avoids burdening Living Donor 2002— 0 2001— 2 To Date— 41 the kidney waiting list and increases HEART access to organs for all kidney transplant candidates. All Donor Types 2002—2,153 2001—2,194 To Date—32,206 Deceased Donor 2002—2,153 2001—2,194 To Date—32,167 “Transplant professionals involved in Living Donor 2002— 0 2001— 0 To Date— 39 these and other innovative living kid- LUNG ney donation arrangements have pro- ceeded in the reasonable belief that All Donor Types 2002—1,042 2001—1,054 To Date—10,069 Deceased Donor 2002—1,029 2001—1,034 To Date— 9,869 these arrangements do not violate Living Donor 2002— 13 2001— 20 To Date— 200 NOTA Section 301, which is legally and historically inapplicable to HEART/LUNG today’s living donation arrangements. All Donor Types 2002—33 2001—27 To Date—798 Deceased 2002—33 2001—27 To Date—798 “There is no suggestion whatsoever in Section 301 of NOTA that either INTESTINE the ‘living-related kidney trans- All Donor Types 2002—107 2001—111 To Date—696 plants’ of yesterday or the living Deceased Donor 2002—106 2001—111 To Date—683 donation arrangements of today are Living Donor 2002— 1 2001— 0 To Date— 13 illegal. To the contrary, the payment Data from www.unos.org

12 Transplant Chronicles, Vol. 11, No. 1 eatingeating rightright The Forgotten Nutrient By Nancee Vander Pluym, MS, RD

ater may be taken for granted, concentrated while trying to perform water with a squeeze of lemon or lime Woverlooked and not considered normally. Decreased urine volume and can be refreshing alternatives. as important as food. Yet, water is truly greater urine concentration can have a life to the body. Humans can live with- direct effect on kidney function. When Recent research has revealed that out food for several weeks (though not the pancreas is transplanted, there is a many times thirst is mistaken for happily!), but only a few days without greater loss of internal body fluids. hunger. Water is a key factor in suc- water and fluids. Water makes up at Both of these circumstances can have cessful weight management. least 60 percent of the human body a negative effect on keeping the trans- and plays a major role in all body planted organ healthy. Water helps to improve metabo- functions. As little as a 3 to 5 percent lism so the body can burn fat decrease in body water can cause For adults, the recommendation for more efficiently. symptoms such as dizziness, fatigue water intake is about two quarts daily. This converts to 8 eight-ounce glasses, Water quenches thirst without and loss of concentration. The body adding calories. requires more fluid to maintain ade- or 64 ounces…a two-liter soda bottle! Urine concentration or color of the Water adds volume to the stom- quate function when experiencing hot ach so less food is eaten. and humid weather, increased physical urine is a good guide for knowing if Water keeps your energy level up activity, fever, vomiting adequate water is being consumed. and aids in good performance or diarrhea. The goal is for urine to be a pale yel- low or very light. If the color of urine during exercise. gets darker, the body is sending a sig- Water is needed by the kidney to nal that adequate water is not being remove byproducts and wastes as consumed and the body is stressed. fatty tissue is broken down. Certainly after undergoing a transplant you do not want to risk any potential When taking medications, is there a harm to that precious organ. preferred fluid choice? According to Mary Martin, Transplant Pharmacist at Many people say they simply do not Banner Good Samaritan Medical like the taste of water. There are many Center, “I have never seen any litera- other choices for fluids, such as soft ture telling patients not to take a med- So, how much is enough? The actual drinks, juice, coffee, tea and milk. Be ication with a warm, cold or hot drink. amount of water and fluids needed for aware, however, that there may be rea- Compliance is the key issue.” each person can vary. Men typically sons why these other fluids are not However, grapefruit or grapefruit juice have more body water than women your best choice, such as extra calo- should not be consumed by transplant because of their greater percent of lean ries, carbohydrates or caffeine. patients. Grapefruit interacts with the muscle mass. Infants, children and Caffeinated beverages supply water, absorption of immunosuppressants and older individuals require special atten- but in many people they act as a mild can lower blood levels of the medication, as their thirst reminder is less diuretic, causing the kidney to excrete tion. This can risk rejection of the obvious. According to George water the body needs. A general rule is transplanted organ. Blackburn, MD, the associate editor of to limit caffeinated beverages to two Health News, thirst is not a reliable eight-ounce servings daily. Water is your best choice for hydrating indicator of water needs. Individuals your body. It is the first step on your who have received a kidney and/or Body weight is also an important post- road to maintaining a healthy transplant concern, so you may want T pancreas transplant also require special lifestyle. C attention to their fluid intake. to avoid beverages with excessive calories. As you consume more water, About the Author When your body doesn’t receive the body reinforces this healthy choice Nancee Vander Pluym, MS, RD, is enough fluids, it still must perform all by actually making you thirsty for Transplant Nutrition Specialist with of its functions, but now under water. No- or low-calorie flavored Banner Good Samaritan Medical “stress.” So, body fluids become more water, seltzer or mineral water, or Center in Phoenix, Arizona.

Transplant Chronicles, Vol. 11, No. 1 13 keepingkeeping fitfit Powered by Water By Vanessa Underwood

or those of us who exercise (hope- three hours or for intense short-term depletion) during marathons and other Ffully this is all of you), you need activity, water is the best choice for long events. The guidelines can be T water—more water than a sedentary hydration. Sports drinks are also a viewed at www.usatf.org C individual. Water is often taken for good choice, as they contain potassi- granted, yet it can make a critical dif- um, electrolytes, sodium and chlo- ference in one’s athletic performance. If ride, all of which help the body the water lost by the body is greater recover. Check the label on your than 3 percent, physical efficiency will sport drink to make sure it has less be impaired. We lose water when we than 10 percent sugar. sweat, so if you are exercising (especially in hot weather) be sure to replace IN HEALTH & HAPPINESS! those fluids. We can lose as much as 50 Editor’s Note: grams of fluid per minute through sweating. Not only can your athletic In a major revision of its guidelines, performance suffer, but you can USA Track and Field, the national become physically ill or even endanger governing body for track and field, your life. Your body constantly loses advises non-elite and non-profes- water, not just by sweating but also sional marathon runners to be care- by breathing. ful not to consume too much water during long events, but to drink to When you exercise, you should avoid quench their thirst only. (Elite or alcohol and caffeine, because they are professional athletes run too fast to diuretics (i.e., they make people uri- risk overdrinking.) Too much water nate) so they cause the body to lose can lead to hyponatremia (sodium water. For exercise that lasts more than

A New Heart, A New Life By Richie Bernardo Before I had my heart transplant 12 years ago, I transplant journey, or as an ongoing way to connect worked as a crane operator. I have not returned with others who share a common bond. Friendships can to this heavy construction work since my transplant. last forever between people who understand what anoth- Now I work around the house and volunteer er is going through. Walking away from a for Mended Hearts, St. Francis Heart group meeting with a phone number in Institute and the New York Organ Donor your pocket, knowing you can always Network. I also facilitate a transplant reach out, is a good feeling! support group in New Hyde Park, Long Island. My wife, Alice, a teacher, is working past retirement age to maintain our comprehensive During my 11 years as a support group health care coverage. We travel, bowl and enjoy our facilitator I have found that different children and grandchildren. T Richie Bernardo received a heart C people have varying needs for support transplant 12 years ago. His wife, groups at different times in their lives. Alice, works as a teacher. Richie Bernardo lives in Astoria, NY, with Support groups may serve as temporary his wife, Alice. tools to help you cope through a trying time in your

14 Transplant Chronicles, Vol. 11, No. 1 More Local Strategies to Increase Organ Donation By Suzanne Lane Conrad, RN, MS, CPTC

n 2001 there were just over 6,000 promoting the World Wildlife coalitions have not given up I deceased organ donors while the Fund or an alma mater, organ on promoting deceased dona- 2002 year-end patient waiting list and tissue donation can tion. On the contrary, a lot of stood at 83,000. The rift between sup- become the driver’s “cause”! attention was placed on pub- ply and demand is steadily increasing. Examples of state plates already in lic education in 2002. From the federal Since the number of deceased existence are pictured with government to local agencies and organ donors increases so lit- this article. groups, many precious resource dollars tle from year to year (between and hours were spent in every form of 2000 and 2001 the number In Iowa a set of Donor media to promote the benefits of organ increased only 1.5 percent), Awareness plates (without and tissue donation after death. A new living organ donation has emerged as personalization) cost $10 more than National Ad Council campaign for the dominant option for people with regular plates. More expensive vanity Spanish-speaking Americans was kidney failure. But once all avenues plates are also available. The extra unveiled. Secretary of Health and for obtaining a kidney from a living money generated by this project is Human Services Tommy Thompson donor are exhausted, a patient is returned to the State’s Anatomical Gift launched an initiative entitled placed on the deceased donor Fund. In turn, the Fund pro- “Workplace Partnership for waiting list. vides grants to groups to pro- Life,” designed to get mote organ and tissue donor employers involved in organ Among organ procurement profession- awareness. The Fund can also and tissue donor awareness. als it is well known that the supply of make grants to transplant On the state level, new donor registries potential organ donors is quite finite. recipients, those waiting for a trans- were started and more enabling legis- In relation to total deaths, there are plant and family members for reim- lation was passed than ever before. very few brain dead potential organ bursement of emergency expenses donors. National studies of deceased related to living organ donation or Many of these measures, described in organ donor potential place the total transplantation. Additionally, the state detail in previous issues of Transplant number somewhere between may use a portion of the Chronicles, have been put into practice 11,000 and 14,000 per year. Fund to contract for creation within the past few years, so it’s too Both the high and the low and maintenance of a 24/7 early to measure outcome effective- estimate reinforce the impor- accessible Donor Registry. ness. But every program—and every tance of ensuring that every possible license plate—can make a Organ, tissue and eye procurement T organ is recovered for transplantation, difference! C provided the donor is willing. This organizations and local donation willingness can only be enhanced by education and increased awareness. Recognizing that every possible donor “TEENSPLACE" awareness angle and all opportunities Thank you to the transAction Council’s Teenage Recipient Advisory must be used, what about promoting Board! We are very excited to have Stephanie Mutter, Elizabeth Robinson, the benefits of organ and tissue dona- Alyssa Baye, Arianna Beck, Renae Goettel, Kayla Glennrich, Sara Stowell, tion while driving a car? Bumper Melody Byron, Jonathan Nwarueze and Joe Radomski working with us. stickers are a tried and true mechanism for promoting a specific interest or This group of teens includes candidates and friends of transplanted teenagers opinion. However, eventually the who were nominated by their transplant or dialysis center in response to a sticker fades or peels off. And what if request of Barry Friedman, Pediatric Transplant Coordinator and President of the car is sold or wrecked? There goes North American Transplant Coordinators Organization (NATCO). They will the sticker and the attempt at advo- cacy! In some states, a new and more advise the transAction Council about the needs specific to teenage transplant permanent solution to this dilemma is recipients and help us build a teen Web site. emerging: Introducing donor aware- The advisory board is the brainchild of Trent Tipple, MD. Trent, who was ness license plates. In a new spin on vanity plates, many states offer drivers diagnosed with kidney disease as a teen, is now a pediatric resident and a multiple choices when it comes time kidney recipient. To find out more or share your thoughts, e-mail Jennifer A. T to purchase vehicle plates. Instead of Miller, MS, Transplant Programs Manager, at [email protected] C

Transplant Chronicles, Vol. 11, No. 1 15 Understanding SSI & Work Incentives By Beth Witten, MSW, ACSW, LSCSW

n the last issue of Transplant earned income exclusion in 2003. Ticket to Work Program You can earn up to $1,340 a IChronicles, we discussed programs By January 2004 every state and terri- month, but not more than $5,410 a for people who worked long enough to tory will be sending “tickets” to peo- year in 2003, with no loss of SSI qualify for Social Security Disability ple from ages 18 to 65 with disabili- cash benefits. Insurance (SSDI). If you have not ties. The ticket is meant to help people worked enough to qualify for SSDI, you Social Security representatives, with disabilities get a job at a living may be eligible for Supplemental vocational rehabilitation counselors, wage. You give your ticket to a private Security Income (SSI). SSI benefits are social workers or even your or public employment network. The based on a federal standard. In 2003, employer can help you set up a Plan ticket pays for their services if you get you can get up to $552 per month on for Achieving Self-Support (PASS). a job. Benefits of this program SSI. Some states add to this amount. With an approved PASS, you can include: Social Security believes that if you get a set aside money from your pay, SSI, Keeping Medicare 8.5 years if you transplant, you could be disabled for a or savings into your separate PASS have a transplant and another dis- year. After one year, if you don’t have account. You can use this money to ability and work; another disability, Social Security can pay for school, training, equipment, reevaluate your health status and stop supplies, start-up costs for a busi- Social Security will not reevaluate paying benefits. You should understand ness, etc. If you set aside SSI cash your disability as long as you are and use programs to prepare you to benefits, SSA will still pay you your using a ticket; work while you’re on dialysis or soon full SSI benefit plus the amount you Getting back on disability without after you receive a transplant. This arti- are setting aside. having to complete a new applica- cle describes some of these programs. It is possible for SSI to continue tion if you have a health setback after one year, even if SSA decides within five years; SSI and Medicaid you are no longer disabled. You will You could get Medicaid if you are In 32 states and the District of need to be enrolled in an SSA working—see Columbia, when you qualify for SSI, approved vocational rehabilitation www.ssa.gov/work/ResourcesTool you automatically qualify for Medicaid. program with the intent of becom- kit/Health/states.html In seven states (AL, ID, KS, NE, NV, ing self-sufficient. OR, UT) and one territory (Northern As per the 2003 guidelines outlined For more information about the Ticket Mariana Islands), although you have to in Section1619(a) you can keep to Work program as well as a list of apply separately for Medicaid, you will your entire SSI check and earn $85 employment networks in your area, get Medicaid if you get SSI. In 11 states a month, thus increasing your see www.yourtickettowork.com or call (CT, HI, IL, IN, MN, MO, NH, ND, income above the traditional SSI toll free (866) 968-7842. OH, OK, VA), you may not be eligible limit. Once you begin earning over for Medicaid with SSI because of differ- $85 a month, you must give $1 ent income standards for Medicaid. back to Social Security for every $2 earned. This means that between SSI Work Incentives your SSI check and earned income, SSA will reduce your SSI check if you you can keep up to $1,189 per get other money from such sources as month before you must return your SSDI, VA, pensions and help with liv- entire SSI cash benefit. If you stop receiving SSI, under ing expenses. However, if you have SSI Working has many benefits. Those and you work, work incentives can help Section 1619(b) you can still keep Medicaid if you received SSI for at who have received transplants and you keep SSI cash and/or Medicaid. work say that working gives them Some of these work incentives include: least one month and are still considered disabled by SSA. This is true money for things they and their fami- Social Security may consider bills lies need and want, plus working gives impairment even if you are earning above the you pay yourself as them better self-esteem, a sense of related work expenses and deduct Medicaid state guidelines! Income limits under Section 1619(b) are purpose and the satisfaction that they them from your work earnings that are giving back for receiving “the gift month. higher than state Medicaid income guidelines. For state earnings limits, of life.” We hope that this article helps If you are under 22, unmarried and to show how you can reach your attending school regularly, you see www.ssa.gov/work/ ResourcesToolkit/Health/ fullest potential through programs and could be eligible for the student T 1619b.html work incentives. C 16 Transplant Chronicles, Vol. 11, No. 1 Transplantation Around the World By Jo A. Stecher, MA, RN, BC

y the end of this decade, over ernment under their socialized health living non-related donation is still B150,000 people in the world will care system. against the law. When being evaluated have benefited from a kidney trans- as a donor, family members may be For a person with kidney failure, the plant. Though the United States per- eliminated by lab test results obtained transplant evaluation process is similar forms the most transplants and has the by physicians, but physicians do not in other countries as to the US. In largest waiting list for kidneys, the rest ask personal questions about past Russia, it is interesting to note that the of the world is increasing its use of this behaviors or lifestyle. treatment. number one cause of renal failure is chronic glomerulonephritis, whereas in One of the most important issues to The UK does more than 1,600 kidney the US and UK, the number one cause question is quality of life after trans- transplants annually. Transplants have is insulin dependent diabetes mellitus. plant. Overall, lifestyle improves a lot. been available under the UK’s National Dialysis treatments run for four to five Life changes dramatically, though Health Service since the 1960s. In hours, two to three times per week in sometimes with difficulty. For some Russia, where all transplants are paid most countries. Medical, social and people, it is very hard to accept the fact for by the state, there are 200 to 300 financial information is required in that they are no longer sick, not kidney transplants performed annually. every country to determine transplant dependent on machines and are able to candidacy. return to a more fulfilling life. In other countries, people waiting for The goals of transplantation include transplants seem to stay close to home improving lifestyle, promoting well- and their dialysis centers. Some of this ness and facilitating a return to a full may be due to financial constraints, level of activity. This seems to vary some social. People in France, from one country to another, depending Germany and the US travel the most, on the organ transplanted and the per- taking advantage of dialysis cruises and son’s age at the time of transplant. To home exchange with dialysis patients see the value of transplant, all one has in other countries. to do is attend or participate in the US Transplant Games or meet a recipient. Typical Russian transplant The transplant surgery procedure is Of interest these days is the cash and similar in most countries, although the carry or cash and kidney transactions length of the hospital stay varies, with done in Canada and the US, attracting Russia having the longest at three to foreign nationals who cannot or choose four weeks. The drug regimen is also not to obtain a transplant in their coun- very similar in most countries, with try of origin. For example, there exists triple therapy widely used. Cyclos- “The Arab Kidney Transplant porine (in Russia), Neoral or Prograf, Directory,” where Canadian hospitals steroids and secondary immunosup- pay $1,000 (all figures in US currency) pressive drugs are the routine. Steroid to be listed. This listing serves as an protocols are used for rejection and agreement that for a cash payment, a even plasma exchanges at times. Is the US the premier transplant coun- kidney transplant may be performed. Medications, especially in countries try? There is no “best.” Wherever you with national health systems, are com- You might ask, “But what about the are with your family, friends and physi- pletely covered. Keep in mind that the Canadians waiting for a kidney trans- cian’s support, that is the premier place overall graft survival rates are lower in T plant?” This is not a problem, as candi- for you! C dates with the financial means arrive many other countries. For transplants with many relatives, one of whom will from nonliving donors, Russia has a 75 About the Author become their living related donor. The percent graft survival rate at one year, Jo Stecher is a lung, liver and kidney charge to the candidate for the cash and the UK an 85 percent rate and the US transplant coordinator in Fort Myers, kidney procedure is between $100,000 an 88 percent rate. Florida, and a member of the North American Transplant Coordinators to $500,000, which is eagerly paid. The Living donation is increasing world- Association. Jo, a nurse educator, has usual transplant cost in Canada is wide with Norway, the US and the UK led international tours to observe between $20,000 to $35,000, which is leading the way. Living donation is donation and transplantation in other paid for Canadian citizens by their gov- increasing slowly in Russia, although countries. Transplant Chronicles, Vol. 11, No. 1 17 Pediatric Liver Transplantation By Adela T. Casas-Melley, MD

ediatric liver transplantation has ing categories: neonatal cholestatic effects of portal hyper- Pmade great strides in the last two (where children are born with liver tension. Once a suit- decades and is now considered estab- failure for unknown reasons), metabol- able donor is Adela T. Casas- Melley, MD lished therapy for children with end- ic (where children are born with an found, transplanta- stage liver disease. We have come a abnormality in their liver that leads to tion proceeds. long way from the first pediatric liver liver failure), fulminant hepatic failure transplant, performed by Dr. Thomas (acute liver failure from many causes, Ascites, or fluid accumulation in the Starzl in 1963. With the introduction from viral infections to drug overdos- belly: This is managed medically with of cyclosporine in 1984, pediatric liver es), hepatitis, cirrhosis and tumor. salt restriction and water pills (diuret- transplantation became a procedure ics). When ascites leads to infection, with acceptable survival. In fact, sur- The complications of liver disease or poor feeding, weight loss, or breathing vival increased from 19 percent to 65 its prognosis establish the timing for problems, transplantation is needed. percent. Improvements in immunosup- liver transplantation. Transplantation is Elevated bilirubin (Bilirubin > 10): pression and immunosuppressive ther- performed when a suitable donor can This causes decreased liver function apy as well as improvements in surgi- be identified. Complications seen in leading to decreasing protein in the cal techniques (including reduced-size, children include: blood or increased chances of bleeding split-liver and living-related transplan- from inability to clot, uncontrollable tation) have decreased deaths while itching and recurrent episodes of liver awaiting transplant, and the one-year The devel- infections. All of these symptoms are survival has increased to greater than opment of better indications for transplantation. 90 percent. immunosuppressive medications, better Growth failure: If a patient fails to Despite these advances, we are still monitoring and respond to an aggressive feeding pro- hampered by increasing organ short- better surgical tech- gram, or develops severe vitamin defi- ages. The number of patients on the nique have all come ciencies, he or she should be consid- transplant waiting list, both pediatric together to improve ered for early transplantation. and adult, continues to increase faster survival. than we are able to transplant patients. The waiting time increases and the num- Liver cancers: When confined to the ber of patients dying while waiting is liver, this may be treated successfully also increasing. This has lead to the with liver transplantation. If the cancer development of adult-to-adult living is outside of the liver or if the cancer related transplants as well as the use of has spread to the liver, transplantation stranger donor (nondirected) transplants. is absolutely not recommended. Transplantation is also not considered The situations where liver transplanta- when there is irreversible brain injury tion is the recommended treatment from advanced liver disease, and so have expanded over the last two determination of the patient’s brain decades as success rates have injury is a must prior to proceeding improved. Advanced liver disease is Portal hypertension: This is caused by with transplantation. diagnosed in one out of 20,000 pedi- increased pressure in the veins that atric patients. One thousand pediatric feed the liver. This can lead to bleed- The development of better immuno- patients are listed and 500 pediatric ing from veins in the esophagus (or suppressive medications, better moni- transplants are performed yearly. The swallowing tube) or veins in the stom- toring and better surgical technique diagnosis leading to liver transplanta- ach, and can sometimes tip the balance have all come together to improve sur- tion in the pediatric population has not between stable liver disease and acute vival. We still have many areas of changed. It is still dominated by chil- deterioration necessitating emergency research left to further improve med- dren with biliary atresia (a disease liver transplantation. Children with ications and diminish long-term com- where the bile ducts of the liver do not complications of portal hypertension plications of immunosuppression. form normally), who comprise more are immediately considered for trans- However, if we progress at the same than 50 percent of the patients under- plantation. Attempts are made to man- rate as the last decade, we have going transplantation. The other diag- age bleeding medically with special much to look forward to in the next T noses can be separated into the follow- techniques to try to control the side few years. C

18 Transplant Chronicles, Vol. 11, No. 1 What I Learned the First Year After My Heart Transplant By Donald Ehnot

had a cardiac arrest. Fortunately for 6. The benefits of an active lifestyle Ime, someone at the restaurant applied are: feeling alive, “not just living;” CPR until the ambulance arrived. I eating less; sleeping better; digesting received a heart within three days, but better; thinking better and having started the year 1990 in a weakened more energy. There are no down- state. I learned an awful lot that first sides. year, much of it due to my transplant 7. I suggest walking for exercise. Start center’s insistence that I get active. I out slow, every day. Gradually build had heart disease my whole life and up your endurance and speed. Aim Donald Ehnot, shown could not do anything that required for a 15-minute mile; then 45 min- here at the 2002 US endurance. This was my first challenge. utes for three miles. But any walk is Transplant Games, knows It took three months before I realized better than none. Be sure to talk to something about getting and accepted that that I could push my your doctor about any specific exer- into shape after trans- body. Then the fun began! I would like cise plans. to share some of the things that I 8. As your strength improves, exercis- learned from my experiences. ing becomes easier. The beginning CDs never fail to lift my spirits. is the hardest, when you strength is Find your own “soul” music—it can 1. Listen to your transplant team. Stay the weakest. You are first trying to make a big difference. close to them the first year after sur- build a base of good physical fit- 14. Transplant recipients are under- gery. Report anything that seems ness. Strive to get your heart rate standably thankful and grateful. But abnormal. Ask questions, listen and and respiration rate up. As you once in awhile, be a little selfish— obey. improve, increase your intensity and indulge. You owe it to yourself. 2. Learn about your transplanted workout time interval. 15. Watch what you eat and don’t organ—what it does and how it 9. When you are physically fit, a 20- overeat. Don’t eat foods with more works. Learn how to keep it healthy. minute workout three times a week than three grams of saturated fat or 3. Support from friends, relatives and will maintain your level of fitness. trans fat per serving. Polyunsatur- support groups is nice, but now you 10. If you are more than 60 years old, ated and monounsaturated fats are must take active and total control add strength training to prevent the good for you. Avoid sugar and salt. of your life. Hey, the hard part is loss of bone density. Drink lots and lots of water. over! You, not your spouse or rela- 11. You must not allow yourself to get 16. The way back to good health does tives, must answer all questions depressed. You have so much to be not occur as a steady increase in and issues that affect your health. thankful for. No matter how sick I function. There are good days and Your goal is an active and meaning- have been I didn’t have to look very bad days. You most likely will reach ful life. far to find people that I would not plateaus where there is little 4. Know your medication by heart— trade places with. Hang out with improvement. This is normal. Some name, dosage, frequency and pur- people you like and have fun with. days you won’t feel like getting out pose. Learn the side effects (dry Make an effort to maintain a posi- of bed, and that’s okay. But it should mouth, headache, constipation, tive attitude no matter what. Make it not become a habit. tiredness), and if they cause prob- a way of life. 17. Remember to stop and smell the lems tell your doctor. 12. Know thy body! Your body talks to flowers! Don’t rush through life— 5. The three most important elements you! Listen to it. Learn what it likes you might miss it. Savor it, every of good health are to get active, get and doesn’t like. Pain is your body’s precious moment. Be a participant, T active and get active, both physical- way of warning you. Stop and eval- not an observer. C ly and mentally. Physical activity uate pain before continuing. About the Author increases your blood flow, which 13. Music played a major role in my carries more oxygen and stimulates Donald Ehnot of Coopersburg, Pa., recovery. When I got home after my had heart disease since age three your brain to release endorphins— transplant the first song I heard on “happy hormones.” Endorphins pro- and received a heart transplant at the radio was “When I’m Back on the age of 53. duce a happy feeling and help you My Feet Again” by Michael Bolton. think more clearly. Physical activity It touched my soul. My favorite promotes mental health.

Transplant Chronicles, Vol. 11, No. 1 19 The following note was posted on Let Your Voice www.recipientvoices.org in response to our Be Heard! question from the last issue of Transplant Chronicles. We want to know what you think! Log on to www.recipientvoices.org and log in your responses to the following question that pertains to you! Q: Have you faced financial or insurance challenges A. If you received a live donor organ: along your transplant journey? Do you have creative Has your relationship with your living donor changed approaches or solutions to problems you can share? over time? A: I had my bilateral lung transplant in May 2000. I had B. If you received an organ from a nonliving donor: health insurance through my employer that covered my Have you been in contact with your donor family? If not, surgery and related expenses. In March 2001, I went on what are your feelings about this? Medicare and lost my prescription drug coverage. I am a Veteran, so I had that to fall back on, but the Veterans Administration would not cover my immunosuppressive meds until my first anniversary, another two months away. So I contacted the pharmaceutical companies that manufactured the meds I needed, and asked for a temporary free sample to tie me over. They (Novartis & Roche) both approved my request and provided me with a six month supply of my drugs. It was a Godsend. Now I get all my meds through the VA. Thank you for this forum for us transplant recipients to share our thoughts and feeling in the hope of helping others.

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